Oddly I just received a survey from the World MS Organization regarding employers and MS. Since I wasn't an employer I did not complete the survey yet indicated to them that I could write a few things about my own experience. Really haven't heard anything from them so I guess they are not interested in getting it straight from the horses mouth the people who live it not the policymakers. So I take this opportunity to tell you about my experience, to share it with you in the hopes that it may help some as they go through this difficult period because face it folks it ain't easy.
Work
Most people experience symptoms before receiving a firm diagnosis. Not that long ago patients were often referred to psychiatrists for evaluation, delaying their diagnosis which in some cases robbed them of precious time and resources.
I know of a gentleman whose first symptoms were slurred speech and vertigo. His employer believing they were dealing with substance abuse fired him. Shortly after being let go he received his diagnosis, yet by that time his group insurance as well as all other benefits had expired and could not be reinstated. Today he survives on help from his family and our Canada disability pension plan which places him below poverty level.
At what point should you inform your employer is a difficult question to answer. Presumably it depends heavily on ones relationship with his/her employer and how the disease interferers with the type of work one does. Some would say it is best not to share the news while others believe it is best to let their employer know as soon as possible. My neurologist shared his findings with me on October 7, 1994, my appointment was in the morning and immediately after my appointment I went to work. There was no thought given as to whether or not I should divulge my condition I was so relieved to finally find out what I had that I immediately informed our vice president and my direct reports of the diagnosis. Our VP offered total support which was very comforting as it eased my immediate concerns.
Employers at least the larger ones usually offer employee programs including but not limited to smoking cessation programs, retirement savings seminars, financial assistance for educational programs, safety in the workplace and others. Rarely will they offer programs for employees faced with a chronic illness. In my own experience/situation there were no support programs other than "we're here for you, let us know if you need anything". I recall my first thoughts "Yeah right I will let you know when I can no longer effectively accomplish the tasks related to my position!"
Even dealings with our insurance carrier were done on-the-fly with no one really knowing what was involved, we learned as we moved along the process. First there was short term disability followed by a reduced workweek and then eventually long-term disability. When I asked a question about coverage it was generally given to a third-party consulting firm that specialized in health claims. I'm not saying the support wasn't there I just feel human resources should be aware of a company's policies and if consulting is required due to ambiguity in the wording of the policy then perhaps it should be reviewed as well.
Most importantly organizations fail to recognize or understand the impact a chronic illness like MS has on the employee and their contribution or effectiveness within the organization no matter what level they occupy within the firm. In my case I believe meeting with a specialist to perform a functional assessment would’ve been a tremendous asset to myself as an individual and to our company.
More than anything else I needed inclusion, unfortunately I received gradual exclusion. The disease had progressed to the point where I could no longer navigate stairs. My department was located on a mezzanine floor; numerous steps meant I no longer had access to my department. Taking up residence on the main floor I spent the majority of my time with little if anything to do. I was given the opportunity to relocate my entire department as long as I reconfigured the plans for both floors in order to accommodate our move. First MS and stress don’t mix very well; another common symptom is difficulty in planning and executing complex tasks. Add this to the fatigue which seems to go hand-in-hand with this disease and you will understand why this project was doomed from the start it would never materialize. The cost to accomplish this move/reorganization would have been excessive while a simple stair lift costing a few thousand dollars at most would have sufficed, no one thought of the lift as an option "including myself" a qualified therapist probably would have.
Today I realize I held on longer than I should have and if not for the good rapport I had with my superiors I would've been long gone. No longer having the drive or desire to motivate others, my saving grace lied in the fact that my direct reports consisted of senior employees with excellent skill sets. My department ran well because of the people working with me certainly not because of my efforts which were focused on making it to work in the morning and surviving the day never mind planning six months ahead or even a week for that matter.
Ultimately my solution was to forgo the position I had and remain on the accessible floor.
A year or so passed, the disease progressed forcing me to a shortened workweek; I was now officially on partial long-term disability. I was fed bits and pieces of work but for the most part I had to beg for things to do yet they rarely came, when they did they were totally inappropriate for someone in my condition. This was simply additional confirmation that my employer had no idea what this disease was about and that an occupational therapist would have been invaluable.
Returning home from work I remember telling my spouse "today I worked for 15 minutes". Wish I could say those days were the exception but unfortunately they had become the rule. We relocated to a new building; they were nice enough to construct a fairly spacious office for me on the main floor. This office was totally isolated from others yet there was a ramp leading to the front door, even an accessible washroom. The social contact I had with others dwindled to the point of near total isolation. Since I was on short-term disability I was no longer permitted to participate in the company’s profit-sharing program. Every quarter the company would issue performance results measured against specified targets to establish gain sharing percentages. In a nutshell it meant if the company did well employees were rewarded by receiving a bonus, I received no bonus, yet as a manager I would applaud everyone for doing such a great job. Occasionally usually after repeated requests I was allowed to choose something from our company catalogue, a token meant to replace what I would have received through gain sharing. Having to report a bonus or some other trinket would have made no difference to me whatsoever, the insurance company would have simply reduced my income by the value of the bonus/trinket. Perhaps excluding me was easier than dealing with the situation yet this only accentuated my feelings as a second-class employee.
Our company also supported employees with a retirement savings plan program. An employee having served one year full-time service was permitted to contribute a percentage of their salary into a fund; the company would match this amount. Since I was on short-term disability my salary decreased and my matching contribution amounts were also decreased. Now that I am on long-term disability my income from my employer is nil therefore I am no longer illegible to participate. Of course I could contribute to the plan but my employer would not participate.
My view of this is simply one of discrimination against those of us on disability. When I asked why this existed I was informed by human resources that it was a government matter and in any case my income was non-taxable why did I need to contribute to her retirement savings plan. Don’t these people realize that even though you are disabled at 65 you still need to retire.
The amount of work assigned deteriorated to the point where I simply occupied space. Now psychologically this is not good and it certainly did not help. My abilities were such that I would've been better suited not to mention happier packing boxes for shipping rather than doing nothing.
I remember once asking why I was still considered a manager, I do not recall the reasoning yet it would have made more sense to be reclassified based on my abilities to perform a task within the scope of my limitations at least this would have allowed inclusion and provided me with a sense of contribution.
Being reclassified would have certainly meant a reduction in my income yet our insurance company would have covered the difference thereby reducing company expenses, to me it appeared to be a no-brainer yet instead I chose to keep quiet.
Multiple sclerosis is a disease which in the majority of cases progresses slowly over a period of year’s even decades. The majority of people afflicted with this disease eventually require modifications to their lifestyles and possibly modifications to their working environment or their assigned tasks.
At this point I should bring up a caution or at least something you should be aware of. If you have not given it any thought your chances of being promoted diminish significantly once you announce your diagnosis.
For me work just did not seem that important anymore.
In addition and probably more importantly that core group of people who supported you when you were diagnosed will eventually move on with their careers until one day you realize that no one around you understands or cares that much about your plight. Be cautious if this happens or if you sense this is happening in the words one published neurologist "you are better off collecting disability insurance than being laid off because of this disease".
As time went on my disability progressed to the point where I could no longer make it to the office, the fatigue and physical effort required simply made it impossible. I attempted to work from home for a period of three months but finally had to give that up as well. Currently I am still on long-term disability and the doctor’s prognosis is continued deterioration unless by some miracle medication is found to slow or stop the disease from progressing.
Whatever you decide in terms of work-related issues I wish you the greatest success.
